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Old 10-22-2004, 08:20 AM   #1
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Mystery Symptom : Swelling and Redness Around Eyes

In May of this year my wife was dx'd with stage 4 NSCLC with mets to the brain, spine and pelvis. In May she had major lower spine surgery for tumor resection followed by a couple of weeks of WBR and lower spine radiation. In late June she began chemotherapy ( Gemzar & carboplatin ). She also receives Kytril, Procrit and Zometa. She is currently into her 5th cycle of chemo. The only other drugs that she takes regularly are Vicodin ES, senna and DSS.

Starting in mid August, at the end of chemo cycle # 3, she developed swelling in her upper eyelids, right side more pronounced than left. Gradually, the swelling developed around both eyes including some redness. After lying down her face also gets swollen but the facial swelling quickly disappears after she gets up ( gravity ? ). The swelling with redness around her eyes doesn't disappear after getting up but it does fluctuate throughout the day. The condition is static. It's not getting any worse and it's not getting any better. There is no evidence of swelling or related symptoms anywhere else in her body.

She has been examined by all three of her treating physicians ( med. onc., rad. onc., neurosurgeon ) as well as two nurse oncologists and an ER physician. NOBODY knows what to make of this. Consensus opinion is that it's NOT being caused by any of the tumors in her brain or lungs. Consensus opinion is that it's most likely being caused by an unknown allergen. The problem with that diagnosis is that she doesn't have any of the other symptoms that usually accompanies allergy. There is no redness in her eyeballs or conjuctiva and there is no watering of her eyes or nose. There is no itching or sneezing. There's only a small amount of discharge that sort of makes her eyelids stick together upon arrising. And, she's tried a couple of antihistamines with no noticeable improvement. RE: drugs as the culprit, the only clue that I can find is that Gemzar, as a rare allergic side effect, can cause " swelling or puffiness of the face, especially the eyelids or area around the eyes " ( from Medline Plus ). Suggests an allergic reaction but, once again, she has no other symptoms to go with it. And, she has no breathing difficulties. The ER physician that recently saw her did mention something about chemo causing vascular damage in the facial area but he wasn't definite on that, more like speculating. And, like the others, he prescribed an antihistamine. One of the nurse oncologists with 20 years experience administering chemo doesn't recall ever seeing swelling and redness around the eyes as a stand alone symptom. Comprehensive blood panel results reveals nothing remarkable. Lastly, we can find no changes in household products, etc. to account for this.

I would greatly appreciate it if any patient, caregiver or healthcare provider reading this can offer an opinion.

Thanks much.

Bill

 
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Old 10-22-2004, 08:41 AM   #2
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Re: Mystery Symptom : Swelling and Redness Around Eyes

Bill, I am so sorry about your wife and thank you for your condolences regarding the loss of my brother - it has only been two months so I still have many thoughts and questions about this terrible disease.

The swelling happened overnight with my brother. He did not experience any previous to being hospitalized and being on intravenous fluids. Initially the nurses said it was how he was sleeping which may have been cutting off blah blah - sorry but they didn't know either and were taking guesses. I think they said the flow of fluids and told me which ones. Anyway, you would think if this was the case that the swelling would go down - even a little - once he sat up. It did not. Monday we visited and there was no swelling. Tuesday we came and his face and eyes were very swollen. Wednesday when I visited he could not even open his eyes without actually forcing himself to. That was when he told me to 'chill' after I had been asking him if he was hungry, needed to go to the bathroom, was comfortable... (still the same in the mind - he was always quick to tell you what he thought . When the doctor could not answer the question it really made me mad. Thinking of the conversation now I wish I would have said 'why don't you know the answer? surely you have seen this before. you call yourself a cancer doctor? you should be able to answer this question!" Sorry, please make sure you persist. Like I said in my post, when we got to Hospice they told us they would not give him the intravenous fluids because that's why his face and eyes were swollen, the fluid had no where to go since he was not eliminating any of it. Only when he got to hospice did he get a cathedar. Why didn't they give him one at the hospital? The other reason they gave us for the swelling was that the body was shutting down. My brother died two days after he started swelling. I don't want to startle you with that correlation and I apologize but you wanted to know our experiences. And I apologize if I went off subject. I think why my brother was swelled and why your wife is swelling may not be the same reason. Can you actually pin point the time of swelling was it when she started the meds they say could have an allergic reaction?
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Old 10-22-2004, 08:50 AM   #3
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Re: Mystery Symptom : Swelling and Redness Around Eyes

Soca,

Have they investigated that this could be from the brain tumor ? It sounds like if it is because of meds how the heck would you ever find out which med was doing it. My mom was on so much medication we would have never been able to figure out which pill would be causing a problem. My prayers are with you.

Chazzzzzzzz

 
Old 10-22-2004, 06:17 PM   #4
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Re: Mystery Symptom : Swelling and Redness Around Eyes

Thanks for the replies.

SW44 says :Can you actually pin point the time of swelling was it when she started the meds they say could have an allergic reaction?

This symptom started on ~ 8/16/04 which was at the end of chemo cycle # 3. As I stated, Gemzar is the only drug that I can find that can produce this symptom and it's considered a rare side effect. The doctors don't really think that it's being caused by a drug. They keep suggesting something in the household. As I also mentioned, the ER physician did say that chemo can damage facial vasculature which might cause fluid to leak and swelling.

TXChaz says :Have they investigated that this could be from the brain tumor ?

All of the doctors say emphatically No. They say that her brain and lung tumors are not the cause of this. For awhile one of the OCNs thought that maybe it was tumor related BUT after two months of no worsening of the condition and no other symptoms emerging she has now ruled that possibility out.

I am very surprised that the cause of this symptom is such a mystery to so many experienced healthcare professionals.

~ Bill ~

 
Old 10-26-2004, 06:28 AM   #5
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Re: Mystery Symptom : Swelling and Redness Around Eyes

Soca,

Have you gotten any answears to your question ?

 
Old 10-26-2004, 09:32 AM   #6
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Re: Mystery Symptom : Swelling and Redness Around Eyes

txchaz

Soca,

Have you gotten any answears to your question ?

/////////////////

Txchaz :

No. But, this doesn't surprise me. So much of this entire process has been a guessing game.

~ Bill ~

 
Old 10-26-2004, 11:10 AM   #7
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Re: Mystery Symptom : Swelling and Redness Around Eyes

I understand your frustration, when I hear oh we are right around the corner of a cure I gotta wonder !!!!

Chazzzzzzz

 
Old 11-11-2004, 01:43 PM   #8
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Re: Mystery Symptom : Swelling and Redness Around Eyes

Quote:
Originally Posted by SOCA
Thanks for the replies.

SW44 says :Can you actually pin point the time of swelling was it when she started the meds they say could have an allergic reaction?

This symptom started on ~ 8/16/04 which was at the end of chemo cycle # 3. As I stated, Gemzar is the only drug that I can find that can produce this symptom and it's considered a rare side effect. The doctors don't really think that it's being caused by a drug. They keep suggesting something in the household. As I also mentioned, the ER physician did say that chemo can damage facial vasculature which might cause fluid to leak and swelling.

TXChaz says :Have they investigated that this could be from the brain tumor ?

All of the doctors say emphatically No. They say that her brain and lung tumors are not the cause of this. For awhile one of the OCNs thought that maybe it was tumor related BUT after two months of no worsening of the condition and no other symptoms emerging she has now ruled that possibility out.

I am very surprised that the cause of this symptom is such a mystery to so many experienced healthcare professionals.

~ Bill ~
HI

It really does sound a lot like allergy eyes. My daugther, who by the way has no cancer, has had this happen her entire life. They've never really pinpointed what she's allergic to, and she has no other symptoms of allergy, with it.

But, the face swelling in the morning makes me think more of lymphatic drainage problems. Have they pursued that possibility?

 
Old 11-11-2004, 06:10 PM   #9
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Re: Mystery Symptom : Swelling and Redness Around Eyes

SR40 :

Thanks ~ Allergy of unknown origin is still the consensus opinion. I personally still think that it's drug related and the current suspect is Decadron. Could be just a coincidence but my wife hasn't received any IV Decadron for about 3 or 4 weeks and we noticed that the swelling has lessened quite a bit during this same time period.

~ B ~

 
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